Know the Signs, Fight for Victory

March 15-19, 2021, is Marfan Virtual Hill Week

Even though we cannot meet with our lawmakers in the nation’s capital this year, we can still voice our concerns and advocate for issues that matter to the Marfan community. We are making it easy for you to participate safely from home through our new Legislative Action Center

Please join us as we advocate together during Virtual Hill Week, March 15-19, 2021.

Lawmakers care about the issues that matter to you, their constituent. The issues we are advocating for now are:

  • Increased funding at NIH to advance research and education on genetic aortic and vascular conditions.
  • Sensible opioid laws that consider the needs of chronic pain patients and also support the development of alternative therapies
  • Support for the Department of Defense Medical Research Program’s study on vascular malformations and musculoskeletal disorders – not only will this help veterans but also people in the Marfan and related conditions community.
  • Healthcare coverage that continues to ensure that people with rare and chronic conditions are protected.

Simply click on Educate Your Lawmakers and input your contact information so that your email goes to the right Congressional offices. You will see the Foundation’s critical legislative issues listed and will be asked to select one that is most important to you. Make sure you complete the section where you are asked why this issue is important to you so that your letter is personalized. Once you finish, your letter will be automatically emailed directly to your Senators and House Representative.

Let’s make our voices heard in unison during the week of March 15-19. We can make a difference.

If you have any questions, please contact Eileen Masciale, the Foundation’s Chief Program Officer,

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The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.

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